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User
Posted 01 Aug 2025 at 09:01

Hi Jonathan

I've not started RT yet. The meeting yesterday with the oncologist was fairly short but he said he will see me again in 4 weeks. I think RT will start after the PSMA PET scan, and if it proves to be metastasis, then presume RT will treat that too. That's what I thought. I'll be sure to clarify this when I see him again.

User
Posted 07 Aug 2025 at 15:09

PSMA PET scan booked for 14/08/2025 to check the possible mets on spine as per earlier bone scan. Fearing the worst of course, but hoping for the best. Probably the story for most on here.

User
Posted 07 Aug 2025 at 16:50

Hi again Davey.

Best of luck with your PSMA scan on Thursday, mate. 🤞

User
Posted 08 Aug 2025 at 10:25

Sorry if slight Thread drift. 

With a PSA leap to 2.9 4 years post RT/HT I'm waiting on Oncology consultant appointment. Seems that PSMA PET scan the ideal investigation but with a lengthy waiting time and a cost-based reluctance. 

Has anyone paid for one privately and if so can the results be fed back into the NHS procedures? 

And yes I know I'm lucky in that I could afford it, but doesn't make much difference to the worry.

Good luck to all.

davej 

User
Posted 08 Aug 2025 at 10:36

Hi Dave

My local NHS hospital in Ipswich aren't able to do PET scans so I was referred to Colchester hospital, which is part of the same NHS Trust. There did seem to be a reluctance due to costs, but I fulfilled the criteria so they decided to refer me. 

I was told a waiting list of at least 4 weeks, but I was surprised to get an appointment on 14th August, just a little under 2 weeks after the referral. You might find the waiting list is not as bad as you are led to believe.

User
Posted 08 Aug 2025 at 10:58

Thank you DaveyH.

My hospital Trust does have the equipment and I do meet the criteria agreed nationally 6 months ago. 

I shall press my case on those grounds, but offer to buy it in if that speeds overall timescale.

Good luck with result(s).

 

User
Posted 08 Aug 2025 at 11:35
Be aware about 8% of men don't express sufficient PSMA scan for it to work in which case there are other types of scans. I paid for my PSMA having got quotes from several hospitals/Centres as it was even more difficult to get it on the NHS at the time. I can confirm the scan can be ' called ove'r by treating hospital as happened in my case but I got them to put it on a disc just ib case they could't.
Barry
User
Posted 10 Aug 2025 at 20:00

^ Thanks for that info, Barry.

dave.

User
Posted 02 Sep 2025 at 19:52

Saw oncologist today. PSMA PET scan results did not show any mets. The suspicious area on spine that bone scan picked up, is likely a bit of arthritis. Phew, what a relief! Never thought I’d be happy to be told I have arthritis! It’s been a horrible few weeks waiting and expecting the worst. I’m on Relugolix for 6 months, with radiotherapy to start in early January for 4 weeks Monday to Friday. After a month of Relugolix, no real side effects so far, apart from a lack of libido. 

User
Posted 02 Sep 2025 at 22:04

Originally Posted by: Online Community Member
The suspicious area on spine that bone scan picked up, is likely a bit of arthritis. Phew, what a relief!

Brilliant news, mate! I'm cracking a can of Stella to celebrate with you. 

User
Posted 02 Sep 2025 at 22:37

Cheers Adrian! 🍻🍺🍺

User
Posted 02 Sep 2025 at 22:38

^ DaveyH: "Saw oncologist today. PSMA PET scan results did not show any mets. The suspicious area on spine that bone scan picked up, is likely a bit of arthritis. Phew, what a relief!"

So pleased for you  -  celebrate!

May your good luck/news continue.

Have to say I am becoming increasingly concerned as to why it'll be 4 months between my red flag PSA and any possible action. Think I'll chase harder.

User
Posted 04 Sep 2025 at 00:06

Hi Adian,

Rather belated reply to your query on different scans based on my experience and what I have read.  I had CT scans to plot movement of my Prostate over several days and to check the position of Prostate at times before radiation delivered.  It is not as good as MRI (particularly MP MRI) in finding tumors in soft tissue.  Bone scans, as you would expect, are better at identifying tumours in bones.  With the introduction of the PSMA scan this can replace the bone scan and better help find deposits of cancer elsewhere.  An Australian Professor envisaged a time coming when PSMA would replace a bone scan because it can do this and more. However, it is more expensive and more difficult to produce reliably.  It also has a short half life and does not work for about 8% of men because they do not exhibit sufficient PSMA.  Even the PSMA scans can fail to find tumours sometimes which has been proved by putting the same men through other types of scan for example the 18F-DCFPyL, also known as PyL(PYLARIFY) scan.  However, conversely, this failed to show some tumours seen in the PSMA scan.  Clearly, it is impractical to put patients through many additional expensive scans to arrive at finding almost 100% of a mans' cancer which is impossible with current imagery anyway, as very small pockets of cancer can be too small to be seen on any scan.

Edited by member 04 Sep 2025 at 00:15  | Reason: Not specified

Barry
 
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